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Author Topic: LauderdaleDennis - Introduction (Update Treatment Interruption)  (Read 3012 times)

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Offline LauderdaleDennis

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LauderdaleDennis - Introduction (Update Treatment Interruption)
« on: October 29, 2019, 01:13:29 pm »
Hello everyone, as this is my first post, I hope I am in the right place of the forum :)

I am approximately 13+ years positive and only started meds around 7 months ago. I went against the grain because I watched a friend go (monitored) almost 20 years without medication. Clearly that is not the recommendation nowadays, but I had made that choice to just monitor, and hope for little damage and better meds to be available.

The mojority of those years, my cd4's remained around 550 and I always had a viral load of 50k, with one blip 10 years in, down to 20k.

Needless to say, my number was called and my immune system was on the edge and ready for help by about 8 months ago. I am going to share my experience and my opinion once starting meds... I am certain and hopeful that others will hopefully have more and longer lasting benefit from Biktarvy.

Please forgive if I ramble, but also considering the competency of my doctor, so I will share my story.

When I was ready for meds around 7-8 months ago (viral load finally jumped to 1.5 million and cd4's dropped to 200"s and even at start of treatment as low as about 176 if I recall correctly)... My doctor, whom after doing the math is likely treating in the range of 500-1000 positive patients and doctors along side of her are close to these numbers x about 10 docs. So this facility has a lot of interest in the field of HIV and they have a lot of data from front line real world treatments. Hence my reason for using this doc. And almost probably the only reason at this point.

*she, nor to my knowledge, any of the other docs (she happens to be the head medical director) are ID docs. She is listed as my PCP with insurance.

She said a few times before... "you dont want any of my medicine?" I have great stuff" There is something really amazing with noooooo zeeeerrrroooo side effects. She then made a swinging hand motion to visually demonstrate how this new breakthrough just destroys hiv and without side effects.

I was blown away... my wait had paid off. Within the next visit or so when I saw the aforementioned numbers were clearly not going to independently recover, I jumped on board with the Biktarvy bandwagon (again this is my exclusive experience). The first month was amazing...not a single side effect, everything she said was true..... then literally the first pill and every pill from the new container, second batch, month two.... gave me the runnns like I never ever had or saw in my life. Next effects was the sore feet...afraid to jump out of bed and touch the floor with my feet without wierd feelings, then a slight recurrence of migraines I hadn't seen in over 18 months, then my eyelids would not open in the morning without assistance,,,, needless to say I wrote all this down and handed it in on my next visit lol ok so I guess she meant it was tolerable or low on side effects? or perhaps all the lunches, seminars, and payments from gilead encouraged her to favor their work.. no pun intended and again this is my rare experience.

I stuck with it and entering month three I was 97% back to normal and maybe even better.. all noticeable side effects were finally ended wootwoot. In fact, some of the runns at least could have been the medicine doing its job and eradicating the virus to the best of its ability.... remember, I was not in treatment for over 10 years... just watching my numbers.

OK, here is where it got scary... once viiral load was undetectable (which especially for treatment naive persons, always happens rather fast...so no miracle there), my doc said there is no need to micro manage me and gave me my first 3 month appointment.

***Note, since the first day of meds I have been like superhuman athlete, at least for a 49 year old with 40lbs over weight - it started with daily 2 hour 6 mile walks no days off, and after three months, I transitioned to 100-150 miles per week riding my road bike 100=bad week  125 = average week  150 weekly is newest goal  I have had 3 recent weeks breaking 150 and as high as 162 miles
I also quit smoking 2packs day for 30 years, 3 months prior to starting meds and 3 months prior to the start of this exercise transformation

Needless to say, 2 weeks shy of my appointment, I developed a rapid racing irregular heartbeat. It only occurs when I lay down to sleep...day or night. When I sleep on my side its more pronounced and more guaranteed to happen.
It was/ is so terrifying... I went out and bought a blood pressure cuff so I can check my heart rate and numbers regularly and when this occurs. Now to be clear, I am not talking a little racing, I mean my right wrist and neck even shook like they were about to explode.

The events are consistent, seem lessened on my back, I haven't smoked weed in 2 months, got some and didnt help. I was stressed about work severely but finished my training and got a 91 on a state test... didn't effect the issue.

Systolic always normal range, at least 50% of the time, dystolic is a little low (52-58)... but I do get some 60+, in fact a doc visit yesterday, tech told me it was 62 (my cuff is new and was $60, so twice the cost of cheapest, for what it is worth.

I researched multiple sites that all seem to share irregular heartbeat as a side effect (though less commonly reported)...and this is in fact what the cuff indicator revealed when checked during an episode....but once my heart calms down in a  minute, that reading was not duplicatable.

Six days of this fearful suffering and getting my test for work behind me, I bravened up and decided to get the message to my doctor that I believed the biktarvy was giving me this heart problem. (I also considered electrolyte deficiency, but have since added them into the mix... feel better but no improvement noticeable with regard to the irregular heart beat at this point)

I left doc the first message through the front desk...she was there that day and I asked for an emergency appointment ir instructions as to if I can stop the medication. The nurse told me she will have doc call me back.

OK, so 2-3 days later and I call again and speak to doc's nurse and say where is the return call?? can I stop this medication? I feel like I am taking a suicide medication I told her. OK, well that got her to get an ok from the doc to stop the medication...no other instructions except that the doc will call me and that my upcoming appointment in two days needs to be rescheduled from Friday to Monday, LOL, was she kidding??

I rolled with the punches and went in at doc's convenience to this past Monday's appointment. No heart attack yet GRRR , thank GOD!

Mind you, I went to my first cardiologist routine appointment (fam history, age, weight,former smoker, are reasons I visited him) 10 weeks ago and practically got thrown out the office after I shared I had no known heart issues, had quit smoking, drink organic blueberry smoothy almost daily with flaxseed, chiaseed, sesame seed, low fat yogurt.. he took ekg, clean bill health and sent me on my merry way.

OK, so yesterdays visit.... first off she never knows or remembers my name, she seems to insist that even though the biggest most reputable info, including from the drug manufacturer says irregular heart beat is a side effect, she claims only absolutely 1 person is quite possible all that was effected. She basically discounted the side effect. Is she in serious denial? She did an ekg and wasnt even clear to me except that there is evidence of past issue but not today... past? as in every night in the past 10 days?

One last side note, my cholesterol soared 70 points in the last 3 months from borderline high to high, and despite this exercise regimen mentioned, I gained 7 pounds (she does acknowledge weight gain from biktarvy)

OK, well thank all of you that had the patients to read this far LOL. Cant cry so I will laugh, I am pretty dam tough!

In my whopping 10 minutes with her she changed her thoughts on a new med two times. I left with her ordering Descovy with Isentress...she said  she never hears or has anyone with any issues across the board with this combo. She also said she would refill Nystatin for thrush and a cream for a foot rash (non fungal/bacterial).

I left with my doubts, but now I was off meds for a full week so am ready in my mind to jump on this new combo. I call the pharmacy to verify she sent the scripts (since 3 times in the past she failed to send all promised scripts and then that is another mission and repeat visits to the office to get her to send remaining scripts.

No need to guess, she sent the Isentress and descovy and forgot the other two. Now I got to go back and forth and fight basically to get the other two...while less important, this is MY HEALTHCARE. Mind yous, I have very good full insurance with floridablue.

So yesterday I checked around and saw almost no info no good reviews and very few bad things about this combo... not sure if that is good or bad. Is this outdated, or is it time tested and one of the best.

Took my first dose two hours ago... hope I tolerate it well. She gave me the HD version of Isentress which appears to be 400mg more than necessary (2 x 600mg)... if she got to know her patients, she would know I rather do 400mg morning and night than 1200mg 1 x - we are all unique individuals :)

So guys and girls, ladies and gents, thanks a million for listening. Any shares or thoughts on if I am a pain in the but or should I drop this non-ID doc and her data for a doc that can remember my name. She seems sincere but actions are louder than words.

Lastly, I do seem to feel the heartbeat issue lessening off the Biktarvy, it seems to have a 7 day life. Not certain if it is the cause, 100% the cause, or if chance even permanent damage exists. Will revisit cardiologist his next available opening and if this persists much more I just may have to go to the emergency room.

BTW 10/29/19
cd4 up over 100 to 376ish
VL popped from undetectable to 70 from being off meds one week
I also take KPAX supplements and
some amino acids and bcomplex which have repaired some neuropathy symptom in my right foot which occured with the walking regiman and possibly long time infected and off meds
« Last Edit: October 29, 2019, 01:27:41 pm by LauderdaleDennis »

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #1 on: October 29, 2019, 01:42:05 pm »
Hiya,

Welcome to the forum. Glad to hear you have started treatment and congrats on quitting smoking, I found quitting smoking a real pain but it's worth it.

Exercise is great, just don't overdo it of course and hopefully, the thrush & foot rash will clear up soon.

Regarding treatment, well starting out or whilst switching the settling in issues for a couple of months would be common enough as you adjust and diarrhoea would not be an uncommon one to manage at first. Just keep your doctor posted, as there can be other underlying issues or parasites, also make sure to run by the Doctor any supplements you are taking. Long term keep in mind there are plenty of medication combos and sometimes it takes one or two tries to find something that works well for you.

The good news is with the suppressed viral load now the HIV is no longer doing uncontrolled measured and unmeasured damage to you

Take it easy, it's the first year in treatment so it comes with up's & downs.

Best, Jim

https://www.poz.com/basics/hiv-basics/nausea-vomiting-diarrhea
https://www.poz.com/article/diarrhea-rates-people-hiv-improved-recent-years
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #2 on: October 29, 2019, 01:57:16 pm »
Hey Jim, thanks for the supportive words! Just looking forward to some normalcy :)

Hopefully a few folks will chime in on this regimen. Seems a little outdated but hope I am wrong or maybe that is a good thing.

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #3 on: October 29, 2019, 02:04:48 pm »
Quote
Hopefully a few folks will chime in on this regimen. Seems a little outdated but hope I am wrong or maybe that is a good thing.

I'm sure they will, not sure what you mean outdated as Descovy with Isentress is a first-line treatment i.e recommend combination where it's available.  There are some here that would call your options the VIP treatments

https://www.poz.com/basics/hiv-basics/hiv-treatment-recommendations
https://www.poz.com/drug_charts/hiv-drug-chart

Quote
Just looking forward to some normalcy :)

It's a journey, not a race besides normalcy is always changing.  ;)
« Last Edit: October 29, 2019, 02:07:43 pm by Jim Allen »
HIV 101 - Everything you need to know
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HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
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PEP and PrEP

Offline ZachR

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #4 on: October 29, 2019, 02:13:41 pm »
Hey there,

Here's my two pence worth,

In terms of being a pain in the butt of doctors, I think I'm a younger version of yours. People on the site already know me probably for my meticulousity towards treatments, subtleties, attention to small detail and overthinking.

That being said, I had a lot of adventures with side effects, especially on Dolutegravir-containing regimen, very similar to your symptoms.

While newer integrase inhibitors (biktegravir, dolutegravir etc) can cause neurogenic symptoms like heart-beat prolongation, vascular narrowing etc. To me, honestly, your case seems to be more because of the sudden immune recovery after years of an inflammatory environment, to which, your system sounds to have well-adapted itself.

You will see the results yourself however, as you have changed to a completely different regimen. If your symptoms fade away, then blame it on the meds, but if there's no obvious change (if only slight change, could be just placebo), then it is the new molecular environment in your body, with a stronger immune system secreting inflammatory cytokines that excite your nervous system. If I were you, though, I would ask my doctor to check out my thyroid hormones, as they often change dramatically, when the immune system undergoes a rapid change. On the other hand, even if there are some immune-related disturbances, they usually settle down over time and as Jim said, the first months and year seem to be the most eventful in terms of side effects.
By the way, honest admirations on exercising and quitting smoking as well as trying to eat healthy, guess you are clearing your way to your 90's. Quite inspiring for me and, guess, many others.

PS: These are all hypotheses and experiential information, no one of which should be regarded as medical advice. Work closely with your doctor to figure out the issue and insist when necessary on further investigation until a solution is found.

Best,
Zach
« Last Edit: October 29, 2019, 02:18:29 pm by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #5 on: October 29, 2019, 02:16:49 pm »
Thanks Jim, will check those links... yes Descovy has TAF and I am on board with that, just couldn't find much on Isentress beyond the year 2011. I like being wrong on this LOL.

I can only pray nothing but the best of meds come available to everyone. To live and have health, is a human right in my book.

And I have read some of your posts, Jim you are one of a kind and an amazing person.

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #6 on: October 29, 2019, 02:25:19 pm »
Thanks Zach... you are spoton, she actually did grab a few vials yesterday to check thyroid.

Ummm hey I am no doc, except to myself for a long time. Was really feeling 100% for the most part until out of the blue these unbearable irregular heartbeat consistently every time I try to fall asleep. I use to love sleep... very easy for me, but now I am like frightened the last 10 days. Well the biktarvy for me, had to end, at least for the weight gain and cholesterol. I dont see folks complaining of weight gain but my doc actually came to me with that...so its either confirmed internally in the clinic or press release from gilead or elsewhere.

I just hope the new med dont interfere with work and workouts lol yes forgive my selfishness.

Nice to meet you and Jim earlier. And thanks for your support and insight.

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #7 on: October 29, 2019, 02:33:16 pm »
Quote
If your symptoms fade away, then blame it on the meds, but if there's no obvious change (if only slight change, could be just placebo),

That's a bit too easy now. It can be true but there can be many things that come and go or underlying reasons, not just IRIS or Meds. In addition, people generally don't like coincidence it does happen often enough though.  ;) 

Thanks Jim, will check those links... yes Descovy has TAF and I am on board with that, just couldn't find much on Isentress beyond the year 2011. I like being wrong on this LOL.

I can only pray nothing but the best of meds come available to everyone. To live and have health, is a human right in my book.

And I have read some of your posts, Jim you are one of a kind and an amazing person.

You're welcome, yeah it's first-line treatment although that does not mean older combinations are no good, plenty of people will find something that works for them and stick with it for ages 10+ years easy or be located somewhere that does not have the newer meds but perfectly healthy & happy with the treatment they do have.
 
Raltegravir BTW was approved in the US in 2007, it's an Integrase-Inhibitors and generally well-tolerated and proven. Not much else to report on I suppose maybe that's why you have not seen much past 2011.

Do keep your doctor posted on your progress, keep in mind up's & down's happen when starting out as you adjust and, to be honest if you really have lost faith in your doctor then look for a second option.
 
https://www.poz.com/drug/isentress
https://www.poz.com/drugs/classes/Integrase-Inhibitors


« Last Edit: October 29, 2019, 02:35:41 pm by Jim Allen »
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Offline ZachR

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #8 on: October 29, 2019, 02:36:20 pm »
Weight gain related to TAF was recently confirmed at the HiV/AIDs conference and was most pronounced among women and age also contributed. There are other studies that also show integrase inhibitors could add slightly to the effect. Weight gain could partly be related to the recovery of the immune system too.
Yet again, things are very individual, in my case, with Triumeq (dolutegravir, abacavir, lamivudine), my cholsterol got borderline high and I got blood pressure, while beeing hypotensive all life and having very low cholesterol prior to treatment. When switched to Biktarvy, my cholesterol, contrary to expectations, got back to my baseline before treatment and my blood pressure to 110/70 from 160/85, which was neurogenic blood pressure due to dolutegravir I speculate as I'm 23 and all my arteries, heart and kidneys are fine.

Honestly, I don't recomment digging deeper, as human biology is very complicated and basically anything could cause anything. So, trust your doctor and when in doubt, exercise, eat healthy and give out a belly-laugh, while still being responsible for your health. Now there are simplified regimens, in a few years we might have a single-drug regimen, who knows, but definitely things will keep getting better for us. :)
« Last Edit: October 29, 2019, 02:50:08 pm by ZachR »
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #9 on: October 29, 2019, 02:50:21 pm »
you see what I am saying Zach.... if its the TAF component with the weight gain, then why would she give me another TAF rx. I think she is overworked and means well but incompetence seems to be surfacing. I have been focusing on the Isentress, but the Descovy might be something I should be paying attention to.

I realize the TDF is said to effect my liver and kidney markers. In fact I recall her telling me all the integrase inhibitors have weight gain issue.

After all these years of being my own doc naturally I let go of the reigns for her and it is proving to be a mistake that I have to stay in complete control of my healthcare GRRR

So she prescribes this combo. GEES now I am really messed up in my head. Maybe I need to go to this other ID doc I have been considering. Her data is useless if she dont have time to know me or my case.

and now I see increased cholestrol from descovy as side effects. Losing it.

and Descovy was just approved 2 weeks ago... ok I am more confused than ever. Guess I am stuck with it for a month now and will reach out to the other doctor I have had in mind.
« Last Edit: October 29, 2019, 03:00:52 pm by LauderdaleDennis »

Offline ZachR

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #10 on: October 29, 2019, 03:03:33 pm »
I understand you very well, as I said, I am too the kind of guy who will inceassently seek the latest data and most competent answers, but there are some things to revisit:

1. Todays meds are gold compared to the earliest ones, and this is a solid reason to be happy.
2. There is a plethora of options regarding treatment, so, if something doesn't work, there will certainly be something that will.
3. There is no drug that you take daily a lifetime, that won't produce any side effect, even aspirin.
4. TAF is a relatively new molecule, and no one knows all long-term effects, but certainly, it's easier than TDF (its precursor) on the body.
5. Good exercise regimen and nutrient-dense food could halt or minimize the weight gain.

Additionly, you said, you have quit smoking, which always leads to weight gain. Wait for your thyroid results, as they also lead to weight gain if the gland is underactive. In my case finding a doctor I could trust was a key literally to surviving.  He understood me, and never said things like 'Oh it's all perfect with the new drugs' or ' It's all in your head', but instead scientifically answered all my questions.  And what most impressed me was that he would say 'I don't really know', when he didn't. Hence, you can also find one like that.

You see, so many aspects, so many possible solutions tl this puzzle.
25.10.19 VL 43
26.05.19  CD4+ 685 %26 VL 55
27.03.19  CD4+ 850 %31 VL 24
***Switched to Biktarvy due to side effects.
25.02.19  CD4+ 740 %30 VL 78
15.01.19  CD4+ 1600(might be wrong) %0.7 VL 54
05.11.18  CD4+ 720 VL 1,100
17.09.18  CD4+ 962 %25 VL 14,000,000 - Started first regimen on Triumeq
15.07.18 - diagnosed, CD4+ 490 %20
20.04.18 - infected

https://ibb.co/X74GV0X

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #11 on: October 29, 2019, 03:08:00 pm »
There are a lot of factors to weight gain, plenty of it not conclusive.

Just take starting treatment for the first time, regaining some healthy weight gain or normalizing as the virus is suppressed. Starting treatment at a more advanced stage, immune activation also seems to be a potential factor. 

Then besides HIV itself, finally the meds as well.

Just all more reason to manage the diet & exercise  ;D Keep the doctor posted if it's unmanageable or a concern. 

Jim

https://www.poz.com/article/hiv-may-lead-big-belly

HIV May Lead to a Big Belly
A recent study found that the virus was associated with abdominal obesity as well as high triglycerides and low LDL cholesterol.

https://www.poz.com/article/starting-hiv-treatment-women-gain-weight-men
https://www.poz.com/article/weight-gain-immune-activation-may-linked-people-hiv
https://www.poz.com/article/normal-weight-gain-switch-integrase-inhibitors
https://www.poz.com/article/integrase-inhibitors-may-tied-weight-gain
https://www.poz.com/article/switching-new-version-antiretroviral-tenofovir-may-lead-weight-gain
https://www.aidsmap.com/news/mar-2015/does-hiv-make-you-fat-study-connects-viral-load-fat-gains




« Last Edit: October 29, 2019, 03:16:07 pm by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #12 on: October 29, 2019, 03:13:21 pm »
I understand you very well, as I said, I am too the kind of guy who will inceassently seek the latest data and most competent answers, but there are some things to revisit:

1. Todays meds are gold compared to the earliest ones, and this is a solid reason to be happy.
2. There is a plethora of options regarding treatment, so, if something doesn't work, there will certainly be something that will.
3. There is no drug that you take daily a lifetime, that won't produce any side effect, even aspirin.
4. TAF is a relatively new molecule, and no one knows all long-term effects, but certainly, it's easier than TDF (its precursor) on the body.
5. Good exercise regimen and nutrient-dense food could halt or minimize the weight gain.

Additionly, you said, you have quit smoking, which always leads to weight gain. Wait for your thyroid results, as they also lead to weight gain if the gland is underactive. In my case finding a doctor I could trust was a key literally to surviving.  He understood me, and never said things like 'Oh it's all perfect with the new drugs' or ' It's all in your head', but instead scientifically answered all my questions.  And what most impressed me was that he would say 'I don't really know', when he didn't. Hence, you can also find one like that.

You see, so many aspects, so many possible solutions tl this puzzle.

Mod-Note

Zach,

You are on my radar for all the wrong reasons twice this week. I had sent you a PM regarding references and if I have to remind again it will lead to a temporary ban from the forum

Jim
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Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #13 on: October 29, 2019, 03:17:24 pm »
I know Jim, but I am talking 150 miles per week on my bike.... that is literally 14 hours workout weekly. and I am gaining weight and my cholesterol is up 70 points. It is a cardiovascular suicide explosion waiting to happen.

Reason for Biktarvy switch agreed by doc was cholesterol and weight gain, in the event it did not benefit the irregular heart beat me and her agreed the other two reasons were critical anyways

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #14 on: October 29, 2019, 03:25:04 pm »
Oh, I'm not doubting you. 

Just saying there are multiple factors to weight-gain and cholesterol spikes. Hopefully with time, settling in and now switching this should settle down but keep the doctor posted on your progress, don't overdo the cycling ;)

I may have missed the irregular heartbeat or was it just feeling or brief versions of heart palpitations?  Anyhow hope it continues to settle for you.

 
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Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #15 on: October 29, 2019, 03:26:22 pm »
Zach... just really confused.

on the smoking, I quit 3 months before starting meds with no weight gain and no exercise. Yes remarkable but true. In fact I had an arsenal of patches and nicotine gum...only used 2 x 20 mg patches for the entire quit. Something in me just didnt care for cigarettes any more, so much that it was easy peasy! Practically cold turkey I guess

On the TAF vs TDF, it seems there are still debates and I had read that boosted TAF was the one that showed hopeful benefits. I asked my doc about that yesterday and she said "its still in debate"

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #16 on: October 29, 2019, 03:29:20 pm »
no Jim it was the irregular heartbeat that prompted the switch and discontinuance of the Biktarvy in my book. It's been about 10 days without fail if I go to sleep, within 3 minutes I am awaken with crazy out of control through the roof hear beat racing. I can even feel it in my neck and right wrist. Terrifying man. I am talking 911 serious. I sleep with phone in bed now and have been timing an appropriate time to just go to ER. If it isnt 100% better next day or two I have no choice

off Biktarvy for 5 full days so giving another day or two. some days lately seems to be getting better but scared.
« Last Edit: October 29, 2019, 03:31:54 pm by LauderdaleDennis »

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #17 on: October 29, 2019, 03:38:00 pm »
Okay and last 10 days this issue and 5 days since the switch and no improvement. 

Sorry to hear that, I have experienced heart palpitations when going to sleep myself so I can appreciate how unnerving it can be. Keep working with the Doc and the cardiologist, I would say keep an open mind about possible causes at this stage, let them investigate.

Now on a note, reading back the thread it might be that your doctor asides from bad paperwork is a very good doctor but if you have lost faith in them then switching doctors might be an idea, at the very least to give you some peace of mind.



« Last Edit: October 29, 2019, 03:40:36 pm by Jim Allen »
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Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #18 on: October 29, 2019, 03:49:02 pm »
yes 5 days off Biktarvy, on nothing. And some signs of improvement but very limited. example 1 day I thought I was finally better, but the next two days I experienced the same thing... but 1 of those 2 days not as bad as previous. Basically I still have reason to believe that I was recovering off of the Biktarvy... but now instead of rx'ing something completely different which would eliminate all variables, she rx's me stuff with side effects similar to those I need to avoid.

I havnt dug in so I hope Isentress and Descovy both say nothing about irregular heartbeat...that would be a big plus.

At the same time my doc is not convinced the irregular heartbeat was from the biktarvy but she agreed to the switch anyways, specifically because of weight gain and cholesterol.

Two items both associated with the new regimen...you see why I am feeling freaked out.
« Last Edit: October 29, 2019, 03:51:09 pm by LauderdaleDennis »

Online harleymc

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #19 on: October 29, 2019, 04:08:12 pm »
Cannabis is a great way to induce a heart attack. It you have heart issues stay away from weed

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #20 on: October 29, 2019, 04:18:34 pm »
Yeah, I hear you.

Quote
instead of rx'ing something completely different which would eliminate all variables, she rx's me stuff with side effects similar to those I need to avoid.

I do think at times too much importance is given to reported side effects forgetting it does not necessarily mean causation or that it happens to everyone, drugs with similar effects might have overlapping sides effects sure, but it does not mean I would experience the same side effect between them. Ultimately my own experience is it's not as simply as picking a med that never has ever had x side effect reported.

Anyhow, a tad off-topic I suppose on that part. Do keep working with the doctor, try not to read too much about the drugs or stress about it though.

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Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #21 on: October 29, 2019, 04:19:29 pm »
Cannabis is a great way to induce a heart attack. It you have heart issues stay away from weed

Really?
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Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #22 on: October 29, 2019, 04:40:33 pm »
I second that.. really? LOL

well under normal circumstances I dont have a heart condition and I can attest throughout life it has provided a lot of benefit.

you are right for now though... no benefit under these circumstances that I can see or felt.

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #23 on: October 29, 2019, 04:45:22 pm »
Thanks Jim, but I guess common sense don't come into play. I understand what you are saying but If I were someones doctor and had to write a script, I would make sure it did not have ingredients known to cause my patient adverse reactions or would not write a script that my patient would be allergic too.

Isn't that the basis of good medicine. First thing every doc or hospital wants to know is if you are allergic to any meds or ever experienced life threatening side effects potentially from a med.

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #24 on: October 29, 2019, 04:55:05 pm »
ok well for better or worse I cant keep from speaking my mind. I got through to my doc's nurse (1 hour of my life) and let her have it (nicely as she is not to blame). I asked her how on earth my doc cant remember 5 minutes after our appointment that she needs to write and send off 4 scripts..only sends 2. (did this to me twice before already)

I asked how on earth did she agree to switch my med based on weight gain and a dangerous cholesterol level increase, yet wrote a new script for top ranked drug blamed on those very things.

Docs in other office today but she promised my scripts to the pharmacy and a call back about doctors reply. My doc dont make calls. LOL

I worked for two different veterinarians many moons back... both stayed in the office late hours to call worried families about their hospitalized pets care and well being.




« Last Edit: October 29, 2019, 05:18:52 pm by LauderdaleDennis »

Offline Jim Allen

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #25 on: October 29, 2019, 05:37:20 pm »
Thanks Jim, but I guess common sense don't come into play. I understand what you are saying but If I were someones doctor and had to write a script, I would make sure it did not have ingredients known to cause my patient adverse reactions or would not write a script that my patient would be allergic too.

Isn't that the basis of good medicine. First thing every doc or hospital wants to know is if you are allergic to any meds or ever experienced life threatening side effects potentially from a med.

Not really the same though. I mean you have switched to other ingredients because you felt the first ingredient was causing problems, and some of the other ingredients remained the same.

Bictegravir, emtricitabine, and tenofovir alafenamide changed to;
Raltegravir, emtricitabine, and tenofovir alafenamide

ok well for better or worse I cant keep from speaking my mind. I got through to my doc's nurse (1 hour of my life) and let her have it (nicely as she is not to blame). I asked her how on earth my doc cant remember 5 minutes after our appointment that she needs to write and send off 4 scripts..only sends 2. (did this to me twice before already)

I asked how on earth did she agree to switch my med based on weight gain and a dangerous cholesterol level increase, yet wrote a new script for top ranked drug blamed on those very things.

Docs in other office today but she promised my scripts to the pharmacy and a call back about doctors reply. My doc dont make calls. LOL

I worked for two different veterinarians many moons back... both stayed in the office late hours to call worried families about their hospitalized pets care and well being.

I've always made more headway taking to doctors face to face rather than through the nurse or by phone, and I would always based on experience expect better care or commitment for animals from a Veterinarian then Doctors. I have to admit though I've been very lucky with regards to the Vet's over the years, and when my last one died I was upset about his passing. Although I will never forgive the vet that missed cancer in my dog 20+ years ago, i knew they were wrong.

Look if you are unhappy with the Doctor and are failing to make progress with them than personally I would not waste any more effort on them, tomorrow I would start looking for a new one and see if you can't sit down and work out a treatment without the TAF if you feel that's what you want to try.
« Last Edit: October 29, 2019, 05:51:52 pm by Jim Allen »
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Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #26 on: October 29, 2019, 05:52:37 pm »
Thanks Jim... sorry you lost your pet. I lost mines as well.. many years back, and apartment living has limited my attempts for a new furry friend. But it is on the horizon :)

Ye, actually going back as far as six months back I fished out a nearby ID. He even has a 5 star review that says he personally returned a call after hours LOL. Hey we are all human and in defense of my current doc, I believe the issue is overload. Whether its corporate or in her control, it can only lead to poor medicine. They are into numbers... more clients, more money, more people helped and in treatment regardless of casualties and subpar services. I wish them well but the writing is on the wall simply because of the little things like missing scripts and poor communication.

On a side note, first day on Isentress and feeling better than expected. A little dizzy, a little afraid to eat lol. And I understand your points. If I continue to feel good and if my further checks show no direct cardio issues on the side effects list, I am willing to battle the weight loss and cholesterol. I even read somewhere that someone had improved cholesterol on Isentriss...perhaps it was not with descovy or if true, perhaps it will cancel out anticipated elevated levels from Descovy.

Most important this week is to see if irregular beats are of the past. I got my referral for an excellent nearby cardiologist... not the same one as last time but this guy is very close to me with even better reviews and credentials. I hope they can see me very soon.

I am doing my best for HIV med to be my only med at least for the next 40 years :)

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #27 on: October 29, 2019, 05:56:59 pm »
oh wow Jim, just noticed you are in Dublin woot woot. My mom had the Irish heritage and dad was from Greece. You and I are just about 4,134 miles apart. A hop, skip, jump and a little flying.

Offline Texland

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #28 on: January 10, 2020, 03:43:55 pm »
Howdy,

Back to your original post, about the irregular heartbeat. I've had something similar for years. It's hard to say if it started when I went on Truvada some years back. I was in the clinical trial for Biktarvy. About three months in I gained 25 pounds. Two years later and my weight hasn't changed. The study people said there was no connection between the trial drug and weight gain. When the trial was unblinded, I had been on Bikatarvy the whole time.

I tried talking to my doc about the pounding heart and weight gain and if they relate to Biktarvy. He dismissed any connection without hesitation. Most everything he prescribes is from the Gilead product line, I wonder if he won't try options from other companies.

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #29 on: May 29, 2020, 10:34:07 am »
Hello Folks, I hope everyone is doing well. I am hoping to get some feedback, as I did check some threads, and my suspicion that my doctor may be making a mistake needs some opinions please.

I have just come off my third arv in my first year of treatment. I have developed sleep apnea and excessive weight gain since 6 months into the first med. I have switched from Biktarvy to Isentress/descovy to now odefsey. I have been persistent in my head since 6 months into biktarvy that my symptoms were from the regimen. Medicine changes were implemented slowly... first a med change to another Integrase inhibitor containing TAF, then again a switch away from integrase inhibitors to yet another medication containing TAF. If I am correct, only remaining variable worth removing is the TAF.

TAF is clearly indicated that a common side effect is swelling of the throat... now I am not certain how to interpret that since I connect swelling with pain, blue, needing ice. In this case I developed a form of sleep apnea that does not kick in 4 hours in a certain level of the sleep cycle, but instead immediately as I dose off, allowing for zero sleep and seemingly cardiac type of symptoms.

Now I certainly put on 35 pounds and the TAF + Integrase inhibitor combo is said to be double wammy for weight gain.... so I just may have pushed the envelope with weight gain, however I believe it is all the TAF. I have trouble swallowing at this point and also physically now have a double chin progressing.

I will spare yous, but 50 years old and positive of over 10 years monitoring numbers before starting meds. Caught the numbers changing spot-on and immune system recovered immediately. Currently UD and T's at 650... higher than the 550 baseline I had for 10+ years.

I have followed all doctors referrals for 8 months of suffering... cardiologist, pulmonologist, echocardiogram, EKG's, bought my own kardio-mobil at home FDA device, bought my own blood pressure device, bought my own oximeter sleep device, had a diabetic friend rule out blood sugar issues and so forth... I also had my very first rush (drive) to the Emergency room in my life and my very first call weeks after that to 911... only to be told I am talking and therefore breathing,... better to stay home upright position because hospital was not safe due to covid.

Now that I noticed the throat swelling side effect of TAF... I am thinking a light bulb that this is the issue and insisted my doc try me on a new med with no TAF or TDF for that matter. He agreed, and also agreed I have a lot going on and to take a break. Now I was relieved when he said that, but I also thought it would be for not more than maybe 2 weeks. He asked when was my next appointment and I answered 4 weeks for labs and 6 weeks for the revisit. In his tone I think he knew that was too long away, but he failed to ask me to move my appointments closer and instead said if I start to feel sick to call him.

Now I and my immune system are troopers for a long time. He mentioned he likes Juluca and after checking many threads, I agree.... while it has an integrase inhibitor, it does remove the TAF and 1 drug completely, not to mention folks seem to have amazingly low side effects. So I am on board. I am very active before this happened... 175 miles a week on my bicycle, so if I eliminate sleep apnea I can have no problem burning calories. For some reason my exercise induces the sleep apnea... my theory is that because I ride a road bike and have gained 30 pounds, my torso (120 pounds) supported by my upper body, is building muscle in my throat, chest and upper body and some how tightening my throat even more.

OK, so today to date I missed maybe 4 days of treatment and frankly I feel so many side effects diminishing. I am not certain if sleep apnea will now diminish, but I will say my pants already feel looser, a few long walks I must have belched gas every 10 feet for an hour... so certainly whether direct or indirect, I need to lose this weight. In my 20's I did lose 100pounds, so I speak from experience and am ready to rock and roll once again.

My main questions

1) stopping for extended period of time like 6 weeks.... will this somehow make my doc decide against Juluca because I am likely to have some viral rebound in 6 weeks when the new med is RX'd?? I need to be on a med so yes I agree 1-2 weeks to clear my system, measure a return to no side effects, and observe if apnea stopped... but I do not want to be told I am no longer eligible for Juluca

2) can anyone clarify what is meant with TAF/TDF and even some other ARV's as to what is meant by swelling of the throat? Could it be what I am experiencing... " A tightening and collapse of my airway and trouble swallowing" and therefore causing sleep apnea or is it referring to some other type of reaction like painful obvious swelling.

3) Has anyone felt any ARV or class of drug caused them to develop sleep apnea.

My plan regardless is to lose weight and do it by my athlete level of exercise, however this weird form of sleep apnea prevents me from exercising. I have read up on low VO2 connection and "impaired exercise ability" with or from sleep apnea. **I have already lost 5 pounds in just a few days off the TAF + integrase inhibitor.

Again, I never had health issues, no-one in family predisposed to anything like this.

Lastly it should be noted that the Doc is extremely experienced 20 years, hold HIV specialty credential, and himself has been positive for 20 years. So this is really the best doc I have had in my first year out of about 10, when you add in the specialist.

I also acknowledge that he has bent over backwards to read all of my many notes and emails to the point where he told me yesterday that he literally can't keep up with me.... he should imagine how it is for me then :) ... He is still the best, just wondering if waiting 6 weeks will hurt my chance for Juluca and if so I will make a fake excuse to move appointments sooner, because I must refrain from bothering him directly at this point, he may chase me away like all the other "bad" docs did.

I am thinking to say I have emergency travel plans and need to push my labs to immediately and the followup to 2 weeks.... that still puts me off meds for 3 weeks. Not certain why he just didnt rx straight to pharmacy... it is not like I wont need to be on a med.
« Last Edit: May 29, 2020, 10:39:17 am by LauderdaleDennis »

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #30 on: May 29, 2020, 10:54:12 am »
also forgot to mention my tongue had red patches and a bump on the front left which all is clearing up after only 5 days off of the meds.

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #31 on: May 29, 2020, 01:48:58 pm »
**also wondering about if my symptoms can somehow be related to lactic acidosis

sleep apnea, fast heart beat, all connected to exercise(always)? If I dont exercise I am almost fine. My doctors seem to think I am crazy at this point but could this be the issue going on for 8 months? I even had gone through a lot of muscle damage and inflammation recently but attributed it to abrupt discontinuation of red yeast rice (an OTC statin) or would I be dead by now?

Interesting for my newb understanding... TAF in all three of my regimens is an NRTI << common side effect lactic acidosis?

well I am off of it, so lets see how it goes.
« Last Edit: May 29, 2020, 02:01:13 pm by LauderdaleDennis »

Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #32 on: May 31, 2020, 07:38:24 pm »
ok Emergency room last night... I thought I had lactic acidosis, but was cleared and also cleared for Rhabdo. I think this is anemia that has been going on aggressively for about 10 months now. I had read something also about statin induced anemia (I was on red yeast rice)

any thoughts?

Offline virgo313

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #33 on: June 01, 2020, 10:42:40 am »
Hi LD,
I think your Q is “too medical” for many of us to reply as most here are not doctors.
You mentioned “my dr may be making a mistake”.. Why not see another Dr to ask for 2nd opinion. Tks
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Offline LauderdaleDennis

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Re: LauderdaleDennis - Introduction (Update Treatment Interruption)
« Reply #34 on: June 05, 2020, 10:54:50 am »
Thanks Virgo... ye there has been 10 doctors all just keep passing me around like a hot potato.

I am sure I have deficiencies, as my body struggles to repair my muscles.

I am quite certain myopathy and or even myalgia.

The first one touches on both exercise intolerance, statin related and irregular heartbeat

The second is said to be related in 1-10% FTC in HIV med

My new ID doc is putting me on Davoto this coming week. And the above theories do say can be 2-6 months (after discontinuation statin and or the HIV med) if a recovery will happen. Feel like I was in a plane crash. Thanks for looking out :)

 


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